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Fatigue, flushes, neuropathy, cloudy urine... not ME/CFS

Discussion in 'General ME/CFS Discussion' started by diwlo, Feb 25, 2016.

  1. diwlo

    diwlo

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    Hi all,

    I guess this is just an update on my condition, and obviously a cry for help. I described my symptoms already in some previous postings (http://bit.ly/24rQsPz), but things are changing so I think an update would be good.
    Well, I decided to get a second opinion in another clinic, given that in the first clinic they basically decided that I had ME/CFS, based on the fact that all exams kept coming back negative. In the new clinic they excluded ME/CFS, mainly because I do not fit Fukuda's nor the Canadian criteria (no pain, no PEM, no tender lymph nodes...). They also excluded depression. The problem is that they don't understand yet what is going on. But the good thing is that they keep trying.

    So here are my symptoms: persistant, severe fatigue, burning legs (diagnosed as small fiber neuropathy), occasional cloudy urine, hot flushes caused mainly by alcohol (and some food) intake, floating stools.
    The burning in the legs is really nasty, and it is probably my worst symptom, together with the fatigue. It is the first thing I feel when I wake up in the morning, and I have to get up quickly because when I move around it is more bearable.
    I have been experiencing the hot flushes for a bit more than a year now. They thought of Mastocytosis or Carcinoid syndrome. But both were excluded.

    Is anyone experiencing similar symptoms? Any ideas?

    Thank you very much, keep fighting!
    diwlo
     
  2. anciendaze

    anciendaze Senior Member

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    Have you been tested for a number of autoimmune diseases? Is an immunologist, endocrinologist, urologist or gastroenterologist involved? Recurrent cloudy urine sounds like an urinary tract infection that either persists or is restarted, for example by transfer from bowel to urogenital system.

    If all common explanations fail, it may be time to consider rare inherited disorders, etc. You might get someone more knowledgeable to bounce some ideas off Find Zebra.
     
    Hutan and diwlo like this.
  3. diwlo

    diwlo

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    Thank you for your reply! So far I had several blood and urine exams + whole-body PET scan, but I haven't been tested for autoimmune diseases. My doctor is a specialist in internal diseases. He now wants to present my case to colleagues from other specialties. I hope that some of them is going to have an idea. Patience is everything... Thanks for the Find Zebra website! Didn't know that one!
     
    taniaaust1 likes this.
  4. Old Bones

    Old Bones Senior Member

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    I experience, or have experienced, the severe fatigue, burning legs, and cloudy urine. My burning legs only started after the onset of rheumatoid arthritis, so I agree with @anciendaze that autoimmune disease is an avenue to explore. Having said that, medication put my RA into remission, but the burning legs (and arms) persist. I've made a connection to eating high-histamine foods, but it seems you've already considered this with your reference to having ruled out Mastocytosis.

    I also made a dietary connection with respect to the cloudy urine (only after eating grains and starchy vegetables, and definitely "dose dependent"). I was told by a nurse that cloudy urine can be associated with candida. This may be true in my case, since treating the candida with anti-fungal medication made a difference. Reducing consumption of starches also helped, so perhaps the starches fed the candida. These days, I rarely notice the cloudy urine, and when I do, the water in the toilet bowel is much clearer than it previously was.
     
    diwlo likes this.
  5. taniaaust1

    taniaaust1

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    Its very good that your doctor is trying hard to get to the bottom of it all. There are so many different uncommon things out there that many things can take many years to get diagnosed.

    You could also put your symptoms into a website such as http://www.diseaseandsymptom.com/SymptomChecker/Default.vbhtml and then check out all the things it comes up with.
     
  6. Timaca

    Timaca Senior Member

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    My urine gets cloudy if I eat foods high in histamine. Old Bones mentioned the histamine connection.... and since you mentioned feeling flushed after alcohol and some foods then it is worth checking into histamine intolerance. I write about it quite a bit on my blog: http://www.youseasonwithlove.com/ Check out the resources page for more info.

    Of course get checked for autoimmune issues.

    Also, check into other food intolerances. Gluten can cause neurological issues. If you eat too much fish, your mercury levels could be high. Check that out with a blood test.

    Good luck!
     
    diwlo likes this.
  7. diwlo

    diwlo

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    Thank you so much for your kind words and helpful comments. The symptom-websites systematically come up with carcinoid and masto, which is also what my doc was thinking of. Ruled out so far. Personally, I suspect some metabolic or histamine-related issue... but I guess these are not easily diagnosed. Timaca's blog is very helpful. It is so great to have such a supportive community. Thanks a lot and good luck to all of you guys!
     
    Hutan likes this.
  8. Timaca

    Timaca Senior Member

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    diwlo~ May I also suggest testing for Vitamin B6 and Vitamin B12? If B6 is high or B12 is low you can also get neuropathy symptoms.

    Good luck!
     
    diwlo likes this.
  9. diwlo

    diwlo

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    Hi everyone! Just a short update (having a bad day today and need to let it out...)!

    Basically, I am still waiting for a diagnosis. The symptoms are the same as described in my message above (Feb 25, 2016), but they are clearly worsening, especially the neuropathy and the fatigue. On top of that, I had a period of three months in which I suffered from cardiac arrhythmia (1400 extrasystoles/day). It just started, went on for three months, and then disappeared. Blood tests keep coming back +/- normal, which is puzzling for me but also for my doctor. He is quite sure that 'something' is causing these symptoms and he is confident that "sooner or later we will bump into it" (his words). Better sooner. He was able to witness the alcohol flush I get after alcohol consumption and now wants to do a specific PET scan (Gallium 68 Dota Noc) in order to confirm or exclude his carcinoid suspicion (all biomedical tests negative so far). I am really sick of this nightmare...

    Wishing you all the best, strength and confidence!
     
    belize44 and Hutan like this.
  10. Timaca

    Timaca Senior Member

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    I suggest doing an elimination diet. Avoid alcohol and the top 8 food allergens (peanuts, soy, dairy, wheat, tree nuts, eggs, fish, shellfish). Also avoid corn, yeast and seeds. See how you feel in 30 days.

    Wishing you answers!
     
    belize44 likes this.
  11. Ambrosia_angel

    Ambrosia_angel Senior Member

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    @diwlo sorry to hear you are still suffering. What have they tested for so far ?
     
    belize44 likes this.
  12. belize44

    belize44 Senior Member

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    One reason I had to stop drinking alcohol many years ago was the unpleasant flushing if I so much as sipped a drink. About four years ago I accepted a wine cooler at a social function and spent a horrible night with atrial fibrillation, shortness of breath and sweating. I absolutely cannot tolerate alcohol. Even if I take an herbal tincture I must dilute it with about half a cup of water and still I get grief from it.

    I hope you find the answers soon!
     

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